Myositis Association Australia
The Myositis Association – Australia Inc is a registered charity, run by volunteers, who have Myositis.
We are here to support and advocate for you, whether you live with Myositis or you are a carer, family member, or friend.
Our goal is to help more people keep in touch, share their experiences and learn practical ways to manage their condition.
We also work to raise awareness of Myositis and to support Australian-based research looking into ways to prevent and treat the disease as well as improving the quality of life for those living with Myositis.
Our organisation is dedicated to:
- Providing a network of support for people living with Myositis and their carers, family members and friends
- Assisting people to help manage their condition
- Connecting people to keep in touch via newsletters, social media, meetings and events where people can access information and share experiences
- Supporting research which includes fostering relationships with researchers and raising funds to prevent, diagnose and treat the disease as well as improving the quality of life for those living with Myositis
- Increasing awareness of Myositis among health professionals and the general public.
Association Quick Facts
- We are a not-for-profit, charitable organisation. Donations over $2 are tax deductable. Funds raised go towards supporting research projects relevant to Myositis and to help us to continue our education, support, awareness and advocacy work for people living with Myositis
- The Myositis Association – Australia Incorporated (Myositis Association Australia) was formed in 2003 and formally incorporated in NSW in 2007
- Membership has grown to over 440 (May 2022) nationwide
- We are an independent body loosely associated with The Myositis Association in the US and other Myositis patient support groups in other countries
- We are a member of the World Myositis Coalition along with The Myositis Association (USA), Myositis Support and Understanding, Myositis Canada, CureIBM and CureJDM.
- Senior rheumatologist, Assoc. Prof Allan Sturgess, is our Patron and guide. We also maintain close links to specialist neurologists and rheumatologists around Australia
- We are a partner of Rare Voices Australia, the peak body for rare diseases in Australia
- Our Committee consists of volunteers who have a Myositis disease and a close interest in the subject
- We maintain a network of support groups across the country so that people can meet together and share experiences and information. Special supports groups have also been set up to for young adults and people living with Juvenile Myositis
- Since inception we have fostered a collaborative relationship with medical specialists in each State and willingly engage in research projects. We provide volunteers for the Myositis Research Consumer Panel established by the WA based Myositis Discovery Programme
- Our logo has been developed to convey the concepts of support, connection and ‘keeping in touch’ which is the essence of the Association. The figures are stretching toward one and another to represent the support we offer each other, the colour shades convey the individualised nature of the Myositis diseases and differentiates us from other Myositis groups
- We thank and acknowledge the assistance of Marc Bobolakis, Graphic Designer and Website Manager from Larkscapes (www.larkscapes.com.au)
- We thank and acknowledge the assistance of Eve Vickerson, Health Writer and Content Marketer from described (www.described.com.au)
- 2002 – The Myositis Association – Australia started as one of the many Keep in Touch groups of The Myositis Association America. Founding coordinator, Anita Chalmers was given a list of 12 names of people living in Australia and New Zealand
- August 2002 – First newsletter went out with a phrase from Anita: “We came as strangers and left as friends”.
- October 24, 2003 – First official Myositis Day meeting held with 10 members in Sydney. The guest speaker was A/Prof Allan Sturgess
- April, 2004 – The first get together of the West Australian group was held with four members attending
- June 19, 2004 – The Victorian group was established by George Scott following a meeting of 25 people held at the Muscular Dystrophy Association in Melbourne. Guest speaker was Dr. Bev Phillips
- July, 2007 – The first Queensland meeting was held on the Gold Coast and was organized by Melissa Elboz with 9 members attending
- March 5, 2007 – Application to become an Incorporated group was granted by the Department of Fair Trading, NSW. At this stage, the Association knew that there were over 150 people throughout Australia with Myositis. Application for charitable status was then made, and was subsequently granted. This enabled the Association to do fundraising and to seek donations which were tax deductible.
- August 2007 – A website was created by Melissa Elboz of Queensland. 24 registered users took part in the forum section
- 2007 and 2008 – Val Dempsey President 2007 – 2009. Representatives of the Association met in with representatives from the Minister for Health in Canberra in the hope generating interest in Myositis research, and to investigate ideas to raise awareness of the Myositis diseases. Unfortunately, neither of these meetings were successful
- 2007 – The Myositis Association Australia Inc staged a National Myositis Awareness Week. Functions were held in Sydney, Melbourne, Perth and Brisbane. Myositis Awareness Day ribbons were also distributed in most states.
- 2008 – West Australian group was reformed under the leadership of Teri Hayes
- 2008 – A/Prof Allan Sturgess became Patron of The Myositis Association – Australia Inc.
- April 29th, 2008 – A meeting was held at the Arthritis Foundation Head Office in South Australia with the intention of forming a support group for people with Myositis in SA. John Begg became the leader of the new group and from the floor, four people offered to help – Rowena Atkinson, Christine James, Trevor Neumann and Rosemary Vaughan
- 2010 – 2012 – David Bunt’s term as President
- 2013 – First National Myositis Conference was held in Adelaide 10-21 August, 2013, with over 100 attendees and 10 guest speakers
- 2013-2018 – Trevor Neumann’s term as President
- 2014 – Life Memberships awarded to Anita Chalmers, Bob Martin and Dan Joyce
- 2014 – Two research grants awarded. One grant to a group in WA to develop a Myositis specific blood test and the other a Victorian group researching exercise particularly for IBM patients
- 2014 – The website is relaunched with a new logo developed to convey the concepts of support, connection, and keeping in touch
- 2015 – Life member and generous supporter, Bob Martin passed away
- 2016 – The 2nd National Conference was held on 10 -12 October, 2016 at the Novotel Wollongong
- 2017 – George Scott, Victorian coordinator since 2004, passed away
- 2018 – Christine Lowe elected as President
- 2018 – Anita Chalmers, founding member 2002, Secretary since 2003 and Life member is awarded an OAM (Medal of the Order of Australia) for her outstanding community service
- 2018 – Life Membership awarded to Trevor Neumann following retirement as President after six years and presiding over National Conferences in 2013 and 2016
- 2019 – The 3rd National Conference was held in Adelaide from 6-8 May, 2019
- 2020 – NHMRC research grant awarded to Notre Dame University and Prof Merrilee Needham WA for $1.8M for a Phase 3 trial to study Sirolimus/Rapamycin as a treatment in IBM
- 2020 – Covid 19 pandemic restricts many activities. Moved to online education and meetings to keep members safe and connected
- 2021 – Life Membership awarded to David Bunt – Past President 2010-12 and Public Officer 2013 – 2018. An awareness raising campaign was undertaken with allied health practitioners and GPs around Australia by publishing articles in journals. Adopted a new Constitution. Covid 19 pandemic continues
- 2022 – Former President Val Dempsey and Polymyositis patient is awarded Senior Australian of the Year Award for her 40 years of voluntary service with St John of God Ambulance. Covid 19 pandemic continues
- 2022 – Jo Morris, a long standing member and great advocate for Myositis and JDM dies at age 31. Upgraded website launched
- 2022 – Lachy Beckett apoointed as an Ambassador of Rare Voices Australia (RVA) in their 10th Anniversary Year